Atrophy and an uncertain future

[Myoak]

Thanks MyOak. You sound like my neurologist. He isn’t convinced I’m nursing home bound either. I reread your post a few times when freaking out over the past couple days—it helps. You’re right. I am high functioning.

But I gotta ask why you think my future is bright? I know you read Giavononni. You must be aware of his recent posts about atrophy and his disappointment in B cell therapies.

Don’t you think I’m running on the fumes of cognitive reserve past?

Hello Mable!

Yes, I share Dr. G's disappointment in some treatments as effective but a little less than hoped, however, there are new DMTs in trial and I believe there will be more effective DMTs in the next couple of years, especially Temelimab.

No, I don't share your view that you are running on reserve fumes! Your brain has been using reserve capacity but there is no indication you have exhausted that and are in a progressive stage. I believe you are having a difficult time right now as typically happens in MS and then get back on track. I believe you will improve, recover, and in the immediate future slow atrophy to near normal aging with Ocrevus. It is completely fair to have that expectation based on evidence from trials.

Plus, who can quantify what good may be generated by the belief you will get better and by the thoughts and prayers of those who empathize with you?

Spiritually speaking, the scriptures repeatedly mention Jesus was moved with compassion and good emanated from him in touching someone's need, and very often, the need was desperate. I believe healing which comes in that form requires two things... desperate need and deep compassion. When those two elements meet, whether it was long ago or is present day, good things happen and, sometimes really good things happen. The very act of caring, of loving, begins a process of healing, repair, and encouragement inside, in the spirit which often manifests physically in the most remarkable ways, affecting health. I experienced it from both sides and it is the most amazing thing.

Yes, you are functioning at a very high level even now. You have health issues coming against your mind and body but you are still functioning very well. Your reserve is working fine. Cognitive reserve isn't like a tank running out of gas if you stabilizing the needle. Your new neurologist is guiding your treatment very, very, well. You are responding logically and coherently. I believe in you. I believe you will not only be okay but I believe you will flourish at life and living far more than current circumstances permit you to see.

Please recognize we all become weary and we all need the loving touch of a compassionate hand to lift our chin and take a longer view filled with the wonders of life.

[Mable]

*Looks op temelimab.

[Mable]

Mable,

There´s a new free app called Decoder from Peak Brain that was proven to help with executive function. (I have a flip phone so have not tested it.)
If the crappy news about the atrophy has a silver lining, perhaps it is that you will do the life style changes that you know affect change but you hadn´t yet gotten around to doing them.

On the same journey,
Temagami

I think we are on the same journey Temagami! I eat super healthy and am at my perfect weight. I exercise 2-3 days a week, but I could obviously do much better.

I'll try out Decoder.

As an aside, I met a researcher who studied aging and brain atrophy. She had just published a paper showing that vigorous aerobic exercise preserves brain. But get this: She found dancers do slightly better than marathoners! She thought it might be because of the added intellectual challenge of learning the routines.

I told my neurologist about it, and he guessed the social interaction that comes with dancing was making the difference.

The takeaway? I should do more Zumba

[Temagami]

There was a clinical trial that showed that salsa dancing helped.

Forgot to mention alpha lipoic acid and trials with it looking at stopping atrophy. Check out the Oregon Science and Health University as it does the trials- OSHU. I take 600 mg 2x/day. I figure why not- don´t want to find out later that it helps.

Giovanni is involved in a publication about time is brain. It´s called Brain Health A guide for people with multiple sclerosis.

[Jules A]

Giovanni is involved in a publication about time is brain. It´s called Brain Health A guide for people with multiple sclerosis.

I hadn't heard of this but after reading your post did some googling. What an excellent resource, thank you!

https://www.msbrainhealth.org/

[Mamabug]

Following this.

I don't really have anything to add. I hadn't heard about tests that measure the size of brains. I'm not sure that I want to know what size mine is.

[Jules A]

I don't really have anything to add. I hadn't heard about tests that measure the size of brains. I'm not sure that I want to know what size mine is.

Lol, I remember being rather insulted after my first MRI when I fully anticipated to hear what a fine specimen they viewed and instead the mention was something along the lines of swiss cheese.

[MyGirlsMom]

Hi Mable! Yes, these results are scary but you have received great advice, comments and support here...all true! We need to live in today and not worry about tomorrow. I am a planner, so this is very hard for me. I am also 57 years old, just had to leave my career and am really struggling right now too. Please know you are not alone! Big hugs to you!!

[Seasha]

I don't really have anything to add. I hadn't heard about tests that measure the size of brains. I'm not sure that I want to know what size mine is.

Lol - me too! Older MSer here and SP, but many of my older peers seem to be in the same boat as far as brain health goes.

I hope Ocrevus works wonders for you, Mable!

[Mable]

I don't really have anything to add. I hadn't heard about tests that measure the size of brains. I'm not sure that I want to know what size mine is.

They must be new. The biggest benefit of knowing I've lost so much brain is that me (and my neuro) are more than happy to put me on more aggressive drugs. Which leads me to a related topic, which I'll start as a new thread.

[Mable]

Lol - me too! Older MSer here and SP, but many of my older peers seem to be in the same boat as far as brain health goes.

Thanks for your replies and support Seasha and MyGirls.

[Mamabug]

... The biggest benefit of knowing I've lost so much brain is that me (and my neuro) are more than happy to put me on more aggressive drugs. Which leads me to a related topic, which I'll start as a new thread.

Ok; thanks for explaining.

[PeterX]

Lol - me too! Older MSer here and SP, but many of my older peers seem to be in the same boat as far as brain health goes.

I hope Ocrevus works wonders for you, Mable!

Is this a fake news?

• Lipoic acid reduced brain shrinkage in patients with secondary progressive MS
• Compared to a placebo, it improved atrophy by 68% Portland researchers found
• In comparison, FDA-approved drug ocrelizumab showed reduction of just 18%

https://www.dailymail.co.uk/health/a....html#comments

A few years ago my neuro told me, already there is no cure for my SPMS, so I gave Lipoic acid a chance. But my brain volume has never been measured.

[Myoak]

Is this a fake news?

• Lipoic acid reduced brain shrinkage in patients with secondary progressive MS
• Compared to a placebo, it improved atrophy by 68% Portland researchers found
• In comparison, FDA-approved drug ocrelizumab showed reduction of just 18%

https://www.dailymail.co.uk/health/a....html#comments

A few years ago my neuro told me, already there is no cure for my SPMS, so I gave Lipoic acid a chance. But my brain volume has never been measured.

No, this is not fake news at all. The peer-reviewed science is below.

Keep in mind this trial was small, nevertheless, we should in no way diminish the significance of it.

If you waiting on a larger trial to confirm this one, don’t hold your breath. This trial began enrollment in 2011, completed enrollment in 2015, the study lasted 2 years and took a year or less to publish. My point is that a larger trial will take a minimum of 7 years.

I have taken Alpha Lipoic Acid for years. 1200 mg is quite a bit, anyone starting out would want to start with less, IMO. I take 300mg with 2 separate meals, or 600mg per day. I have no idea if 600mg is a therapeutic dose. I don’t have MS but if I did I would seriuously consider taking 1200mg. JMHO.

1200mg was the dose in this trial. Tolerability is an individual issue. Again, as always, I mention Dr. Berkson’s book… “The Alpha Lipoic Acid Breakthrough”. I know the man and he is legit.

The full study is available online. I suggest you download and save it for future reference. Click on the line near the bottom of the article that says Free PMC Article to get the entire study.

Lipoic acid in secondary progressive MS: A randomized controlled pilot trial.

https://www.ncbi.nlm.nih.gov/pubmed/...?dopt=Abstract

Abstract
OBJECTIVE:
To determine whether lipoic acid (LA), an endogenously produced antioxidant, slowed the whole-brain atrophy rate and was safe in secondary progressive MS (SPMS).

METHODS:
Patients with SPMS aged 40-70 years enrolled in a single center, 2-year, double-blind, randomized trial of daily oral 1,200 mg LA vs placebo. Primary outcome was change in annualized percent change brain volume (PCBV). Secondary outcomes were changes in rates of atrophy of segmented brain, spinal cord, and retinal substructures, disability, quality of life, and safety. Intention-to-treat analysis used linear mixed models.

RESULTS:
Participation occurred between May 2, 2011, and August 14, 2015. Study arms of LA (n = 27) and placebo (n = 24) were matched with mean age of 58.5 (SD 5.9) years, 61% women, mean disease duration of 29.6 (SD 9.5) years, and median Expanded Disability Status Score of 6.0 (interquartile range 1.75). After 2 years, the annualized PCBV was significantly less in the LA arm compared with placebo (-0.21 [standard error of the coefficient estimate (SEE) 0.14] vs -0.65 [SEE 0.10], 95% confidence interval [CI] 0.157-0.727, p = 0.002). Improved Timed 25-Foot Walk was almost but not significantly better in the LA than in the control group (-0.535 [SEE 0.358] vs 0.137 [SEE 0.247], 95% CI -1.37 to 0.03, p = 0.06). Significantly more gastrointestinal upset and fewer falls occurred in LA patients. Unexpected renal failure (n = 1) and glomerulonephritis (n = 1) occurred in the LA cohort. Compliance, measured by pill counts, was 87%.

CONCLUSIONS:
LA demonstrated a 68% reduction in annualized PCBV and suggested a clinical benefit in SPMS while maintaining favorable safety, tolerability, and compliance over 2 years.

CLINICALTRIALSGOV IDENTIFIER:
NCT01188811.

CLASSIFICATION OF EVIDENCE:
This study provides Class I evidence that for patients with SPMS, LA reduces the rate of brain atrophy.

[rdmc]

My neuro didn't discuss prognosis even though there were signs of prognosis (I'm SPMS.) But I didn't really expect him to because my MRIs were relatively stable. Marc at Wheelchair Kamikaze
has a spectacular post about his MRI being stable yet his progression was relentless misdiagnosis-of-multiple-sclerosis-and.html.

Now that I've developed neuromuscularscoliosis there are much more specific. I don't think it's because they have more information of the multiple scelrosis, but of neuromuscular scoliosis.